A Life Curtailed

“I used to be a very social, very outgoing, active person. And now I find myself just isolating because of the lipodystrophy.”

“It’s a win-lose situation for me,” says Joe Clement of the HIV medication the keeps him alive. The extreme side effects cause what Joe calls “this ‘morphed image’ when I look at myself in the mirror. I can’t stand it.”

For 16 years, the 57-year-old artist has been living with lipodystrophy, which has caused a “buffalo hump,” or dorsocervical fat pad, to grow on the back of his neck. The significant fat accumulation all around his neck and under his chin makes his head appear abnormally large. There is excess fat on his back and abdomen. He also has “facial wasting” and abnormal, excessive fat loss in his buttocks, arms, and legs (symptoms known as lipoatrophy).

The buffalo hump causes headaches, disc degeneration, difficulty sleeping, and chronic back and neck pain. Joe cannot lie on his back or fully turn his head. Because of the extreme fat loss in his buttocks, sitting in certain chairs – like seats on the T – causes uncomfortable numbness. Running, which Joe once enjoyed, is now too painful.

The condition has so altered Joe’s appearance that old friends sometimes don’t recognize him. Once a man with a healthy self-image, Joe now avoids appearing in family photos and feels defensive about his appearance on the rare occasion he goes out. “When I meet people,” he says, “I want to say, ‘I don’t really look like this. It’s not me.’”

In the past, Joe has stopped taking his HIV medication so that he could lose the abnormally distributed and disfiguring weight and feel better. But he knows that negatively impacts his health in other ways.

Lipodystrophy has also caused Joe to become depressed and withdrawn. In September 2011, Joe attempted suicide. “On a daily basis, I really don’t go too far from the house,” says Joe, who lives in Lowell.

With the support of his medical and mental health providers, Joe sought liposuction surgery. MassHealth refused to cover it on the grounds that it is cosmetic and not medically necessary.

Joe is perplexed and frustrated at the barriers to effective treatment. He believes that health insurers should cover treatment for lipodystrophy in the same way they cover breast reconstruction surgery for women who have mastectomies because of breast cancer. “I used to be a very outgoing, active person. And now I find myself just isolating because of the lipodystrophy.”